Assisted death: the final frontier?

Assisted dying has been the subject of recent and upcoming consultations by UK medical professional bodies. Catherine Reilly speaks to Irish clinicians and campaigners on the issue

Marie was not suicidal, Marie wanted every second of life, but she wanted the quality to be there,” Mr Tom Curran, partner of the late Ms Marie Fleming, told the Medical Independent (MI).

Mr Tom Curran

In 2012
Ms Fleming, who was in the advanced stages of multiple sclerosis (MS), brought
a landmark legal action testing Irish law on assisted suicide. Ms Fleming
submitted that a disabled person in severe pain due to terminal and
degenerative illness, and able to express their wishes, “should not be
prevented by the criminal law” from receiving assistance from a person, such as
her partner, to enable her to end her own life.

Suicide
is not illegal in Ireland, but it is an offence to “aid, abet, counsel or
procure” the suicide of another person, with a penalty of up to 14 years’
imprisonment.

Ms
Fleming argued that the absolute ban on assisted suicide breached her rights
under the Irish Constitution and European Convention on Human Rights.

The High
Court dismissed the case but described Ms Fleming as “in many ways the most
remarkable witness which any member of this court has ever been privileged to
encounter”.

The court
also refused to issue an order requiring the Director of Public Prosecutions
(DPP) to clarify policy on factors determining a decision to prosecute in a
case of assisted suicide (a matter not appealed to the Supreme Court).

Ms
Fleming’s case was rejected on appeal at the Supreme Court. However, the court
found it was open to the State “to legislate to deal with a case” such as Ms
Fleming’s, if the Oireachtas was satisfied appropriate safeguards could be
introduced.

The tragic circumstance of Ms Fleming, who died in
December 2013, shone a light on the controversial area of assisted death, which
can take various forms (see
panel, p5).

Since
then, in 2015, a private members bill on assisted dying was proposed by (now)
Minister John Halligan. He could not progress the legislation when he became a
minister.

In June
2018, the Joint Committee on Justice and Equality urged that the Oireachtas
consider referring the issue of assisted dying to the Citizens’ Assembly for
further consideration.

‘Complex’

When asked by MI, Fine Gael did not clarify its
position on this recommendation, with a spokesperson describing “assisted
suicide as a very complex issue”.

“The
competing interests of the individual would have to be balanced with the wider
public interest in safeguarding persons who are nearing the end of their lives
and who might be vulnerable and at risk of abuse. As such, the Minister for
Justice and Equality Charlie Flanagan has no plans to review the existing
legislation.”

A Fianna
Fáil spokesperson said it “would not oppose the referral of assisted dying to a
Citizens’ Assembly for further discussion.

“This is
a long-standing issue, and an informed discussion of the issues surrounding it
is of merit.”

It was
vital that any further debate was respectful and informed and “previous
Citizens Assemblies have achieved this”.

Some 44
Irish residents are members of Dignitas, an organisation in Switzerland which
facilitates “accompanied suicide” (not euthanasia) for people with “an illness
which will lead inevitably to death”, or anyone with “an unendurable
disability”.

In terms
of non-residents, the organisation “calls on doctors who co-operate with
Dignitas” for prescription of the lethal drug. The assessment process includes
“at least” two face-to-face meetings between the Dignitas member and a doctor,
according to its website.

Its most
frequent contacts (not Irish-specific) are from people with cancers and
neurological conditions, ie, amyotrophic lateral sclerosis (a type of motor
neurone disease (MND)) and MS.

“And then
a small group with other ailments, such as tetraplegia/quadriplegia with all
its side-effects; old-age multimorbidity; rare cases of severe psychiatric
suffering, etc,” according to a spokesperson.

Irish clinicians working in the fields of
complex neurological illness and palliative care, who spoke to MI, say very few patients ever raise the
matter of assisted dying or euthanasia.

According
to Consultant Neurologist Prof Orla Hardiman, who leads the MND Clinic at
Beaumont Hospital, Dublin, it is “very, very rare” for an MND patient to raise
this topic.

She said
addressing concerns about the end stage of the condition is an active part of
patient care.

“Once you
have that discussion, you can allay many of the fears people have,” Prof
Hardiman said. “I think part of it is fear of the unknown, fear of choking, fear
of suffocating, all of those fears people have, and you can assuage many of
those fears by having an open and frank discussion.

“It is
difficult; it is not an easy thing to do and you have to do it very
sensitively, but I think that is part of the reason why we don’t really have
people who are looking to engage in assisted suicide in Ireland.”

The aim
of the MND service is to provide patients with a “seamless service” between the
specialist MND clinic, community services and specialist palliative care services,
and this “usually works quite well”.

Research
within Prof Hardiman’s group, examining quality-of-life longitudinally in
patients, has indicated that “patients’ self-reported quality-of-life continues
to be relatively high, even in the advent of quite severe disability”.

Prof
Hardiman said she is aware of possibly two patients who may have decided to
pursue an assisted death abroad, although she had no proof this occurred. This
is in the context of around 2,400 people entered on the MND registry in the
past 25 years.

“Assisted
suicide is illegal in Ireland and it is illegal to assist somebody in procuring
an assisted suicide,” she said.

“I think
we can speak to people in a general way about the things we can do to enhance
their quality-of-life and to make it worth living.”

‘Crisis’

Over the past 15 years, Consultant in
Palliative Medicine Dr Brian Creedon has come across approximately 60-to-70
patients with life-limiting illness who have expressed a wish to end their
lives.

Many were “in crisis”, be it
existential, psychological or physical. However, once they were helped through
this period, “very rarely did that wish persist”, according to Dr Creedon, HSE
National Clinical Lead for Palliative Care who spoke to MI in a personal and professional capacity.

Mr
Curran, partner of the late Ms Fleming, said in a previous media interview that
“over-application of pain medication” to end a person’s life “happens all of
the time” in hospitals and hospices.

Asked
about this, Mr Curran said “doctors admit to it all the time. It is known as
the secondary effect, that their primary purpose is in controlling pain, but
they know the amount of medication being given is going to hasten a person’s
death.”

In
response, Dr Creedon said he “utterly” rejects these statements. He added that
evidence shows palliative care patients using high-dose pain medication are
aware and making decisions.

“All of us would be very, very focused as a profession that we are trying to promote people being as well as possible, and if somebody becomes drowsy as a side-effect of a medication, that is a side-effect we need to respond to…”

Dr
Creedon “doesn’t buy” the double-effect principle, which he said is referenced
in medical literature dating back to the 1960s and 1970s. Today, he said, opioids
and other powerful drugs are used in a manner whereby patients continue to
function well, including safely driving cars and using sharp household
utensils.

“I
utterly reject this principle that we use these drugs for the double-effect,
with the intention of controlling pain but knowing it will shorten somebody’s
life.”

It has
also been argued some patients’ pain level cannot be addressed by specialist
palliative care. As a “blanket statement”, Dr Creedon disagrees.

“I would say that there are rarely people who
have very complex, difficult pain syndromes that we struggle with, but I would
say it is never that we are not actually able to provide some relief — I am not
saying absolute relief, but some relief. I’d appreciate some people have very
complex pain syndromes, but we work in a very holistic sense, realising that
pain is not just around the physical injury or damage to their body, but pain
has a psychological component.”

There
have been calls for Irish palliative care to publish more detailed and robust
guidance in respect of specialist care, particularly in regard to
palliative/continuous sedation.

Dr John
Lombard, Lecturer at the School of Law, University of Limerick, has written on
this topic. According to Dr Lombard, such guidance would provide clarity to
patients on the type of care they can expect at end-of-life.

Dr
Lombard stated there is also the idea that “palliative medicine needs to
perhaps be more proactive in really defining its space”. Dr Creedon said this
is “a fair point”.

“We have
some guidelines from the Irish Association for Palliative Care, we have some
clinical guidelines and there are some international guidelines that many of us
refer to.”

Use of
palliative sedation, where medications are used to intentionally cause
sedation, is “very, very rare”, added Dr Creedon.

The
Oireachtas Committee recommended that “regional discrepancies” in the provision
of palliative care needed to be addressed as soon as possible. Dr Creedon
confirmed progress has not been made on this. However, he notes that Ireland
has “relatively good palliative care services when compared with international
norms”.

He
remains concerned about any potential legalisation of assisted death and
considers that it would undermine trust in the medical profession.

“I would
worry that we would move towards where there’d be two lists of doctors, one who
will end people’s lives and one who don’t, and for lots of reasons that would
not be helpful.”

Increasingly,
he hears patients voicing their concern that they are “a burden” on their
families. He worries that access to assisted death might result in them taking
this option as a result.

‘Control’

Mr Curran has remained active in the
‘right to die’ movement since the tragic case of his late partner, although he
stepped back for a period out of respect for a Garda investigation into her
death (Mr Curran has previously said he assisted in her death).

The ideal
system, in his view, would be where “control should be in the hands of the
person whose life is in question, not in the hands of the medical profession to
decide that that person has a right to die.

“It is
the access that tends to be the problem when it is medicalised because to me it
is a right, and if a person has a right, you don’t need to ask permission to
exercise that right.”

Mr Curran
believes adequate safeguards could be put in place, including assessments of
rationality. He also strongly advocates developing palliative care services and
envisages that assisted dying would occur in “rare cases”.

In the
meantime, it is occurring by means of people travelling abroad or illegally
importing drugs, according to Mr Curran.

He
believes once a rational person has made a careful and informed decision to end
their life, they should have a right to assistance if they need it.

“Marie didn’t want to die. Marie wanted
to live, I wanted Marie to live,” he said. “But that wasn’t possible because of
the illness that she had, and her quality of life had deteriorated so much, and
this is the difference; is it life or is it just existing? And that is a choice
which, to me, a person should have — at what point does life become unbearable?”